The National Organization for Rare Disorders (NORD) considers today’s announcement by the Social Security Administration (SSA) of expansion of the “Compassionate Allowances” program to be extremely important to patients and families affected by rare diseases.
Since Michael Astrue became Social Security Administrator, he has provided strong leadership in addressing issues that were very difficult and discouraging for [...]
In the U.S., the health care reform process has been extremely confusing to many people. The language in the various bills is complex. And many of the proposed changes won’t take effect for several years, even if enacted now.
NORD’s position on health care reform, from the very beginning, has been that any plan needs [...]
Seriously ill patients who have exhausted all treatment options often seek access to investigational drugs by way of government-sanctioned “expanded access programs”. Recently, the U.S. Food and Drug Administration (FDA) implemented new regulations to clarify and increase patient access to investigational drugs.
However, even with the new rules, this topic is more complex than it may [...]
